My narcolepsy diagnosis happened because I was my own best advocate

One lesson stands out as I look back on my diagnosis of narcolepsy with cataplexy: You must become your own best advocate. No one can fight quite like you can to get the diagnosis and treatment you need to function in daily life.

In the fall of 2000, I transferred to Texas Woman’s University. Moving away from home was extremely exciting, but also stressful. A diligent student, I took on large course loads to earn as many credits as possible. I studied for hours, burning the midnight oil with a dream of becoming a clinical psychologist.

I excelled in my coursework and was interested and active in class, earning straight A’s, but I suddenly began having extraordinarily strong urges to sleep. One day, my friend told me she tried to wake me up during class, which perplexed me as I barely realized I had fallen asleep.

I attributed my sleepiness to my heavy studying schedule. I never imagined it was a sleeping disorder.

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Falling asleep at school and at work

The next summer, I began working as an animal care technician in the graduate animal research facility every weekday morning, providing fresh cages with litter, food, and water bottles for the lab rats and mice.

I enjoyed the work, but a few weeks into it, I was completely exhausted. Sleepiness and involuntary sleep attacks plagued my afternoons and evenings. A month into the job, I started having micro-sleeps at work and made several mistakes. My co-workers and boss noticed I was putting two feed bowls or water bottles into the animals’ cages. During a visit to the supervisor’s office, I fell off my stool, asleep.

Still, I attributed my sleepiness to just being a diligent student who was trying to do too much. That is, until two days after Sept. 11, 2001, when I began having sleep paralysis with hypnagogic hallucinations of being bombed and seeking shelter with my family. This began happening every night and took over my life.

By November, my knees began giving out like someone had cut the strings off a marionette whenever I laughed or felt angry. Sleuthing on the internet with my grandma, I soon began to realize my symptoms were consistent with narcolepsy with cataplexy.

I sought a referral to a specialist. I visited a neurologist, who tried to order two sleep studies, an overnight polysomnography, and a multiple sleep latency test. Unfortunately, I couldn’t get diagnosed or treated because my mother’s health insurance didn’t cover sleeping disorders. A month later, after switching to my father’s plan, I was diagnosed with narcolepsy with cataplexy. While I was sad knowing I had a very severe and rare disease that’s often stigmatized in the media, I also felt relief. Many people with narcolepsy can spend years seeking a proper diagnosis.

If it weren’t for my grandma and my determination to figure out what was wrong, I wouldn’t have graduated from college. Especially when it concerns misunderstood and rare diseases, self-advocacy is the key and the hope for improving your health, and your life, as soon as possible.

Note: Narcolepsy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Narcolepsy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to narcolepsy.